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My diagnosis with ALL

On Sunday 6 November, 2011 I was admitted to A&E at the Bath Royal United Hospital with a fever, shaking uncontrollably and with a pain in my shoulders that even a double dose of ibuprofen couldn’t shift. Twenty-four hours and a bone marrow biopsy later, I found myself in the oncology unit having been diagnosed with acute lymphoblastic leukaemia.

It was the culmination of a few months of not having felt quite right. I’d been tired a lot of the time and had a persistent cough that occasionally got so bad I would throw up. I’d had a couple of bouts of what seemed to be the flu, complete with the usual shivers, aches and pains. I’d started waking up almost nightly with my pillow drenched in sweat. Yet taken on its own, none of this had given me any real concern that something more serious was up. I was still going running and getting to the gym whenever I could, and even played 90 minutes of football only a week before my diagnosis. I remember several occasions when I felt I was finally getting better, convincing myself I was going to shake it off in a few days, because that’s what you do when you’re in your early twenties. I’d initially put off seeing the doctor for a while, out of unwillingness to fuss over my health and because I honestly expected to be told nothing more than to get some rest and let whatever I had run its course.

I’d been living and working in Frankfurt, and first saw my German GP in August, when I was prescribed a course of antibiotics for a chest infection. After this failed to improve my cough, I returned and took a blood test. I thought nothing much of this, and indeed never heard anything back about the results, so presumably they didn’t flag up anything abnormal at that point. Instead I was referred firstly to a lung specialist, who ran a lung function test which indicated my lungs were working normally, and took an X-ray which came back clear. I remember being relieved at this but at the same thinking ‘it can’t possibly be cancer’ which seems a blissfully ignorant view now! Following this I was referred to an ear, nose & throat doctor who was similarly unable to find anything amiss.

While all this was going on over September and October, things got progressively worse, and I eventually saw my GP again the week before I was due to fly back to the UK for my belated university graduation ceremony. He took another blood test and arranged to see me on the Friday morning just before I headed to the airport. The doctor called me in and told me my blood results were ‘not very well’, and while he was still unable to determine the cause of my health issues, it was clear that he suspected something serious. I was anaemic, he explained, and should avoid any strenuous activity over the weekend, but was given the green light to fly home. Had he insisted I was too unwell to travel, which would have been well within his rights (I felt, and must have looked, absolutely terrible), I would undoubtedly have been diagnosed in Germany in the next few days and probably had to remain there for several months whilst receiving the intensive first phases of treatment, which would have made for an even more confusing and traumatic time.

As it was, the doc advised me to go straight to hospital upon my return to Frankfurt. In the end I didn’t make it that far; my body held out just long enough to graduate before finally giving in. The evening after the ceremony I was in so much pain I didn’t sleep at all, and the next day I was admitted to hospital in Bath and finally diagnosed. To be honest, I don’t know what I’d been expecting the doctor to say, but I remember the first time the word leukaemia was mentioned, for me it came absolutely out of nowhere. I knew precious little about the disease and hadn’t considered it for a second. It was a classic case of one of those things you don’t ever think will happen to you, but alongside that I simply had no idea this kind of thing happened to people my age who were otherwise in good health.

I look back on the days following my diagnosis as some of the darkest, but for much of that time I managed to remain in remarkably high spirits, which I put down to a combination of shock and large doses of morphine. The outpouring of support from my family and friends of course provided a hugely important morale boost for which I’ll always be grateful. There was also a weird sense of relief that I finally had a diagnosis after months of struggling on, not understanding what was going wrong with my body, and that I was in the right place, with the right people around me, for something to be done about it.

Although it’s unhelpful to do so, it’s impossible sometimes not to torment myself with the thought that had I - or indeed the numerous doctors I saw - been a bit more aware, I could and should have been diagnosed sooner. I’m sure this is something a lot of blood cancer patients can relate to, what with the symptoms often being slow to appear and difficult to categorise, along with the sheer unexpected nature of the diagnosis. As surprisingly common as blood cancers are, they’re still rare enough that it’s seldom the first thing that crosses the mind of the patient, or in many cases the GP, especially among traditionally low-risk age groups.

Had I been admitted a few weeks earlier it’s possible that we could have got away with a less intensive treatment with fewer harsh side effects, but I’m still very lucky in that my diagnosis came early enough for the first-line chemotherapy to be effective. Although I learnt my lesson the hard way, never again will I let myself or my loved ones put off seeking medical advice in case of the slightest health doubt! In my next blog I’ll focus on the initial stages of treatment and how I made it through. Comments and questions welcome as always.

Comments

So much of what you say rings true with me too - especially the relief part. It's funny to feel relieved when you've been diagnosed with something so serious but when you've been ill for so long and not sure what was wrong, if anything, finding out that it was something and, importantly, that it could be treated was an enormous source of relief for me!

I wonder, too, if perhaps it could have been picked up earlier but am thankful it got picked up when it did and completely agree about putting health first and not being afraid of going to the doctor when there's something wrong as like the stitch in time, saves nine addage it could make all the difference!

Didn't realise you'd been working in Germany at the time! As you say getting diagnosed out there would have been more difficult and I sometimes think that certain things happen deliberately at certain moments - I got diagnosed a week before starting uni so a week later would have been much worse.

Thanks again mate and huge respect as always for the way that you just get on with things. Let's show cancer whose boss at Run to the Beat!

Anonymous

20.08.2014

Thank you for taking the time to post this. I appreciated it.

Anonymous

20.08.2014

I was diagnosed With ALL aged 7. My mum knew I wasn't right and she had to get a second opinion after being told by the first doctor to give me calpol and put me to bed. The second doctor checked my blood and then turned up in an ambulance in the early hours the next morning. If not for my mum I probably wouldn't be here now, 20 odd years later.. Love you mummy xoxo